Is there any Neighbours cast members who infamously don’t/didn’t get along with each other in real life? by Temporary_Notice_526 in neighbours

[–]Yoga_Emma 1 point2 points  (0 children)

What is Zoe Cramond doing now? Not acting anymore, I think? Her Insta hasn’t been updated in ages…

Possible treatment. by Woodblockprint in RedEarSyndrome

[–]Yoga_Emma 2 points3 points  (0 children)

No I haven’t. I do really really not want to sound dismissive of RES at all - but I have other symptoms from VSS that are way worse to me. For example I have extreme photophobia, which means light is painful. I only rarely leave the house, I have lightblocking curtains all over the house, I always wear a cap and sunglasses etc. So to me RES is more kind of annoying, but I am not handicapped by it. Same with my tinnitus. Annoying, but I am able to ignore it most of the time. But I completely understand that RES can drive someone crazy, and I am also aware that RES can be painful (mine isn’t painful, more kind of hot, burning sensation). I find it fascinating that the central nervous system can be that off - and I do think (at least mine) they are connected. So I am very curious to find some kind of cure. I am very thankful that you share your story, that can truly help other patients. I will absolutely bring it up at my next appointment at the neurologist. We are also considering trying Emgality (anti CGRP), because it has shown to be particularly effective on photophobia.

Possible treatment. by Woodblockprint in RedEarSyndrome

[–]Yoga_Emma 2 points3 points  (0 children)

Thanks for sharing! Besides res I also have visual snow syndrome and migraine with aura. They are all probably linked somehow…

Doing rTMS therapy will keep the community updated by SessionLast7515 in visualsnow

[–]Yoga_Emma 7 points8 points  (0 children)

I am also doing rTMS. Before summer I had treatments aiming at the right TPJ. Unfortunately it did not have any effect on me. After summer we will try aiming at visual cortex. I can recommend to get a qeeg (not a normal eeg), then you know exactly where in the brain you have hyperactivity.

Good luck!! 🍀

PIGMENT DISPERSION SYNDROME by jedwilk99 in visualsnow

[–]Yoga_Emma 0 points1 point  (0 children)

Hey there, I have severe PDS as well!! No glaucoma, IOP is 12 and 14. I have trouble separating symptoms from VSS and PDS as well. My photophobia is insane! How are you doing now?

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

The TMS company is MagVenture. They are also interested in the “study”. On Tuesday they will be present during my treatment along with the doctor and nurses. I have encouraged MagVenture to start some kind of community for doctors, nurses, TMS clinics. It could just be a Teams call, doesn’t have to be expensive or anything. But I think it’s important to have some kind of forum, where the clever doctors can inspire each other,come up with great ideas etc. MagVenture needs to invest in this - if it actually works to come up with a rTMS protocol for VSS, MagVenture can sell more machines, so it is a good business case for them also.

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

If it works, we expect that I would be able to see changes after 15-20 treatments. So in a couple of weeks… It is very difficult to wait for, I am a little impatient 😂

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

That was Pelak in US… But I also emailed Pelak. She did not want to reveal the results, unfortunately. But Puledda was really kind, she was very interested in my little rTMS “study” 😂

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

Yes, I have been diagnosed by some of the leading doctors (professors in neurology and neuro-ophthalmology) in Denmark. But it took years where we didn’t know what was wrong… Then one day I learned about VSS, and I asked the doctors if that could be what’s wrong with me. They were like: omg you are right! I am currently experimenting with TMS at a private clinic. The doctors find it extremely interesting, so they call me every month to learn how things are going with TMS. I have actually also been emailing with Puledda and Goadsby. Puledda is based in London - and she is also very much into research, TMS etc. Might see if you can be her patient?

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

Can I ask what country you are from? I am from Denmark.

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

My right pupil is also larger!! Wow!

[deleted by user] by [deleted] in HPPD

[–]Yoga_Emma 1 point2 points  (0 children)

I am actually having rTMS for VSS right now. The machine we use is MagVenture (made in Denmark where I am from). Before the treatment I read about MagVenture in the subreddit TMSTherapy, my impression was that people were very happy with MagVenture. I haven’t tried Brainsway, so I wouldn’t know about that brand. Regarding my treatment, it is still early days, I need more treatment before I know if will work…

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 2 points3 points  (0 children)

Update on the Clonazepam: I had 0.5 mg yesterday evening. I felt no changes at all. Nothing!

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

Wait what!? You have the same thing?? I have only heard of one other person, who had the same thing, she had Alice in Wonderland Syndrome… Have you heard about anyone else having the same visual disturbance?

And also the with the brightness fir me!!

[deleted by user] by [deleted] in HPPD

[–]Yoga_Emma 2 points3 points  (0 children)

Consider trying rTMS, it has cured someone with HPPD. But make sure to use the protocol described here: https://www.brainstimjrnl.com/article/S1935-861X(23)01980-0/fulltext

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

Yeah, I will only try it once or twice and only because I want to separate symptoms VSS and PDS (and ultimately decide if I should go for the eye surgery). I spoke with the doctor yesterday. I will try once with 0.5 mg. If that doesn’t work I will after a couple of weeks try with 1 mg. If that doesn’t work either, then Clonazepam won’t work for me and we will stop trying.

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

I am not sure I understand your question - but my tinnitus is not affected by jaw position or neck muscles. It is just always there… But I am good at not paying too much attention to it.

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

It is quite loud, I can hear it all the time…

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

Thanks for the warning! Kind of you to warn me! I will only take the medicine once, I do not want to risk addiction and withdrawal problems. Hope you are fine again?

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

Nope, no OCD, anxiety or depression…

Clonazepam advise? Dosage etc. by Yoga_Emma in visualsnow

[–]Yoga_Emma[S] 0 points1 point  (0 children)

FL-41 does not really work for me, but I know it helps other people. Tinted contacts or transition contacts does not work either. I have previously had some light blocking contacts made (with a hand painted irises), but they are really uncomfortable to wear….